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This weekend opened the long awaited live action “remake” or re-imagining of the Disney animated modern classic Beauty and the Beast, a movie near and dear to me for many and some complicated reasons. No longer a “cartoon” film but one with live actors, this version is likely to affect me even more.

The “original” premiered back in the day – a phrase I use too much as I get closer and closer to 50 this coming October. And really 1991 wasn’t all that much back in the day considering I started out in 1967. Disney’s great new era of animated features began two years earlier with its release of the fabulously entertaining The Little Mermaid. I don’t remember why I wasn’t fully enticed by Ariel (though I can guess) at the time but when Beauty and the Beast was released, I became a grown up fan of each new annual animated feature. Brain cells storing the memory of my first viewing of what would become an Academy Award Best Movie nominee are long gone, but I do remember being as enchanted as countless little girls wanting to be Belle. And I remember being hopeful for the message that I spread today…that people need to look beyond what is on the outside…that people who look different are regular people …not to be afraid of but worthy to befriend and perhaps even love. I didn’t relate so much to Belle (though I loved her love of books and her feisty independence) as I did to the Beast. Though many believe I have self-acceptance of my body differences there was a long time when I thought I was a freak, a grade or two below Beast level and to be honest, those thoughts rise up every now and again.

Belle, the plucky village girl dreams beyond the typical role of a woman in a provincial village with “stuck in the past” residents including the overbearing and chauvinistic Gaston. Gaston only wants Belle because Belle doesn’t want him. And later when Gaston discovers the Beast, he becomes enraged – how could anyone turn him away for a head horned pawed covered with animal fur man beast? This story “as old as time” does not need me to recap how it ends. Instead I write this about how Hollywood and Society still don’t understand how this is too much an one sided story and why it affects me so personally.

The summer before I was to enter college a well-meaning important person in my life had wanted me to be careful at campus parties. Though Smith was and still is a women’s college, male students from surrounding colleges as well as town residents were known to attend house parties. For various reasons that can wait for another blog, I did not participate in usual HS social activities. My inner party animal (pun intended) was waiting to get out. This person knew I was excited to leave home and enjoy all that college had to offer yet worried I was too naïve and inexperienced with partying situations. She later told me she agonized over how to properly prepare me for potential danger. She finally blurted, “Geri, be careful at parties where guys are likely to drink too much and become drunk. A group may see you and decide to make wagers as to who can fu@& the handicapped girl…” Horrified is too much an understatement of how I felt in that moment. I could be seen as a freak experiment? I had finally emerged from my almost 5 year self-imposed moratorium on talking to the boys in my class because in 7th Grade the all too common puberty related self-doubts took a stranglehold of my self-esteem.

I had always known I was different – having congenital deformities of all parts skeleton. I wore unbending prosthetics and my malformed arms/hands/fingers only reached below my bust line. My below the waist body is even more weird — my ugly legs and feet that don’t allow me to walk. I had been used to stares in public and questions of “what’s wrong with her?” as early as I had conscious awareness. I was actually an outgoing little girl, as plucky as Belle herself I believe until adolescence and hormones took over. And I had talked to, even kicked at times, the boys in my classes up until 6th Grade. Finally by the time 2nd half of HS Senior Year arrived, I emerged from my shell and began communicating, however difficult, with some of the guys. Yet I waited too long and I was not invited to my Senior Prom – again chalking it up to that no one wanted to go with the funny looking Geri even as I had grown up with all my classmates in our small school district.

And now this special woman was warning me that again I could be seen as freak just as I was keen to start a new chapter of my life, determined to push myself out into the world – even if it was an all-female college.

See the connection now as to why I feel a kinship to the Beast? Yet life is not a fairytale with all happy endings. No magical transformations swirling in cinematic glory. And the Beast was a guy who was loved by a woman – the way it is generally in both reel and real life. Many more men with physical disabilities are likely to be married. We see this in many more feature films and our everyday world. Women are traditional caregivers. In my many hospitalizations over the years, several in rehab settings, I’ve seen women therapists have relationships with their male patients. The Boston Marathon, while horrendous in its initial terror and tragedy, has in time brought out stories of nurses and other health care providers who have married male survivors with various life changing injuries/conditions. And while I, embarrassingly, have never been in a romantic relationship, I have nonetheless been interested in a few gentlemen over the years. And a couple of times, mothers of a two men I liked would intimate that I should not get my hopes up, that I was not wife material and could not provide a home – in other words, I would be a burden. For those who don’t know my background, I was abandoned by my biological parents at birth – was I too much a beast baby and perhaps would be a burden? These questions have followed me throughout my life.

I still want to see this new version of Beauty and the Beast, for the music I love, for the banter between Lumiere and Cogsworth, for the fairy tale ending that true love sees beyond the beastly exterior. I still want to have that hope for myself.

For all the tributes I share on FB, most are for celebrated or noteworthy people in public life, whether an actor of yesteryear or an actor gone too soon or a beloved astronaut, etc. These are people who made an impact on my life one way or another…whether nostalgic memories or of historic importance.

This tribute is for a gentleman who is noteworthy to thousands of students he taught, of which I was one and is worthy of a blog entry dedicated in his memory. He made an impact on my life in ways he probably wasn’t aware of and I regret to this day, now that it’s too late, that I never thanked him for. And nor did I apologize for behavior I am not proud of looking back on. In fact, I have not been proud of myself for a long time now and which I have known for years I should have asked forgiveness.

J. Allan Pryor’s obituary notes him as a teacher first…”teacher, advisor, friend, beloved uncle and brother…” Mr. Pryor taught seminar style around a large table (or two pushed together?) in a room off the Library.

Believe it or not, I was a very shy insecure HS Student, especially after returning Junior year having missed the latter 2/3rd of Sophomore year to first hellish Spinal Surgery. I was accepted into Junior’s Advanced English Class only after my 10th Grade Teacher/home tutor – the lovely Mrs. Levy who made delicious brownies – “recommended” me to the teacher. For all of Junior Year I never felt as though I belonged (another story for another time). So when it came time to apply for AP English, I was nervous but knew at least I would have to go through the same process…essay writing and an “interview” (I think though can’t exactly remember). And there were fewer slots available. Not everyone from our 11th Grade class would move on. My only hang up was that I knew Mrs. Levy and Mr. Pryor were close colleagues. I truly wanted to be accepted on my merit. Long story a bit shorter, I was accepted into AP English …a class of Classics and European Readings mostly, taught College style. Several of my friends, girls of course as I had barely talked to the boys since 7th grade, were in the class, too, so I felt “safe” as long as I would sit next to them. Didn’t always work out that way naturally.

Senior Year had barely started when I intuitively knew Mr. Pryor liked me …admired me. I was a wee one when I first detected these types of reactions from people. This kind of – what seemed to me – unearned admiration was not welcomed. I’ve always wanted to be liked for my intelligence, my caring, my humor (as lame as it is sometimes), my writing, and my outreach.

Now comes the hard part …I took advantage of Mr. Pryor’s good will. I’d turn in papers late several times. And I’d never be penalized (not that I can remember which is why I’ve always felt guilty). In all the 30+ years since, I was and am embarrassed that I never apologized. Had looked forward to him coming to our HS Reunion in Oct. 2015 thinking I’d finally do what was right. Sadly, Mr. Pryor wasn’t feeling well enough that day to come in the evening and sent his regrets. We always think there will be another opportunity to say what we know needs to be said. One would think I finally learned the painful truth the last time I spoke to my Dad on the day he died, leaving the most important statement unspoken. There is no excuse for not picking up the phone save sheer cowardice and shame.

With the long overdue apology comes appreciation that has grown with each passing decade…never more so than when I watch Jeopardy and Franz Kafka/The Metamorphosis is favorite question to clues every few months. As much as I am happy I know the question, I still cringe as that story has haunted me (the reason why is for another time) from our reading of it for an overnight assignment. And possibly one of the best Pop Quizzes ever was Mr. Pryor having us “draw” main character Gregor after he wakes up. A teacher would certainly know immediately if any student had not done the homework. All the other works we read come to mind during countless Jeopardy clues, too!

There were many more memorable plays and books we read Senior year. And though I never knew why (another reason I should have made contact), Mr. Pryor inexplicably chose me to read one of the most famous soliloquies in all of literature…Hamlet’s “To be or not to be…” Me of the shrill squeaky voice who practically never raised her short hand to answer a question. There were a few guys in our class with wonderfully expressive voices. And not to be sexist, I can think of a couple of girls who would have been great, too. I can’t imagine what my classmates thought. I knew I was horrified and practiced all that winter weekend, the cadence, the pronunciations, the inflections… What was he thinking? And now all these years later, I’m a public speaker. Can’t say that was precisely the beginning but perhaps Mr. Pryor saw something inside of me I was too insecure to at the time. Isn’t that what a great teacher is…one who sees what a student can’t see of oneself? I wish I knew if he knew what I’ve been doing with my presentations.

Another lasting lesson I learned the hard way was how to read peers’ work and offer comments. Simple “this is good writing” notes would not suffice. We were graded in part on our “critical review” of each other’s assignments. Yea, that was fun – Not! Unsurprisingly, I nearly always picked my friends’ papers – the girls! Until one day myself and another student were directed to the cafeteria to read one another’s papers (I think on Zorba the Greek – nearly 50 year old brain cells have been lost) since we had both turned in our assignments late and had not been in the binder left in the Library for classmates’ comments. Yep, the other student was one of the guys…one of the good guys, one of the cute guys. I enjoyed what ever book we had read and though I didn’t think my paper was all that, I did guess it was likely better than the one I was tasked to read. How could I write comments on a paper that wasn’t very good? And of a cute guy sitting across the table from me…one I barely said two words to ever. As I wrote above, he was one of the good guys and at one point he piped up, admitting his paper wasn’t great and I shouldn’t feel bad for being “critical” — a gallant gent letting me off another mortifying hook.

Madame Bovary proved to be a revelatory read as I actually had comments in response to Mr. Pryor’s questions – only as usual I’d whisper them to whichever friend I was sitting next to. This one friend this one time I caught began to yawn and stretch her hands as Mr. Pryor called my name. Seemed that M was pointing down at me…curse of being much shorter than everyone else. No one would ever admit how many times this had occurred previously but I then learned not to whisper anymore!

Back in the day, early in the school term, Seniors were assigned to write an autobiographical essay. I think (who knows – my timeline may be mixed up) this was to help us with our college essays. As usual, I procrastinated and struggled with what to write. There was the obvious topic but I tried to stray as much as possible. I wrote first of my Grandparents and eventually got around to the obvious. I was truthful no doubt about the pain, but I also ended the paper on an optimistic tone as I do believe that is what keeps me going. And I actually handed that paper in on time! I was, however, absent when graded papers were returned. Dear Mr. Pryor had suggested that classmates ask me to read it. Those assigned personal essays had not been left in the library binder for comments. I didn’t know until the next day when I sat down and another classmate – and a guy even — asked me to read my paper. I was very confused till somebody explained later. Oh the embarrassment once again…what did my classmates think…that I was the teacher’s pet? And this could be why I began to “test” Mr. Pryor’s good will…I wanted him to get frustrated with me. Probably didn’t help either that Senioritis set in early after being accepted to college in December. Yet I never succeeded because J. Allan Pryor was a generous soul…one I didn’t fully appreciate then.

Besides the serious topics of AP English, we also had fun. Mr. Pryor gave our class permission to celebrate Birthdays! My 17th Birthday came in October on a Monday and I was extremely grumpy that morning because no one had wished me a HB yet. Second period I came into our classroom and actually slammed my books on the table, a rare display for me at the time. Truthfully, not sure anyone noticed. Wasn’t long, though, before Sarah, Lisa and others brought out the baked Birthday goodies, singing along. Needless to say, I was delighted even if embarrassed while a year long tradition was started. Somehow it was always us girls who brought the snacks and desserts until Mr. Pryor shamed the guys. Last day of Senior Year, the guys went all out with fancy foods (with some help from Moms and Grandmothers), drink, and a coffee urn. What a feast we had to end a terrific year with each other.

AP English with Mr. Pryor was a highlight of my Senior Year at BHHS even as I didn’t fully embrace it till too late. The lessons I learned those months from a passionate teacher whether from literature or of life are timeless. I can only hope hundreds of other students thanked him enough so he knew what a great force he was at Byram Hills. And somehow I hope the indirect messages sent to him with the apology he was due from me were received. Even if they were, the message of thanks were not, save now here …where I believe he can still see what is being written, I pray.

Mr. Pryor, thank you for being one of BH’s beloved Teachers …you had quirks for sure and a wicked sense of humor, with a great intellect and a gentleness that could help the hardest to reach students. Don’t worry, I won’t include here that last question I asked you in the main office on final day of Senior Year when some had arranged a Hawaiian theme complete with plastic leis. I think I finally did shock him with my tongue in cheek potty mouth. Thank you for being one of my biggest fans when I didn’t deserve it. And thank you for pushing me out of my comfort zones (several times!). You were a teacher in the best sense, teacher and advisor. My condolences to your loving family and friends and to all the students who made the extra efforts to exchange correspondence with you these many years. You were a treasure here on earth. Enjoy reunions with all the former BH teachers gone …some long ago, others more recently. Please give my regards to Mrs. Levy if possible as I owe her an apology as well. Enjoy all the spiritual reunions with loved ones and happy encounters with any you may wish to discuss why this or that with!
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“I was happy, I knew that. While experiencing happiness, we have difficulty in being conscious of it. Only when the happiness is past and we look back on it do we suddenly realize – sometimes with astonishment – how happy we had been.”
Nikos Kazantzakis, Zorba the Greek

Since Sunday, I have shared a slew of Baby Pictures on my personal FB account. The Baby Pictures only begin at approximately 12 months though. I’ve definitely been looking back at a time I don’t remember. I’ve also been reflective as my 49th Birthday approaches Saturday. Some friends who I adore believe in the idea of a month long celebration!! Being a middle aged single woman sans partner of any kind, being motherless and currently being more housebound than not means I don’t have lots of ways to celebrate for long, let alone a month, but I will admit I DO LOOK FORWARD to my Birthday each year.

Quite a while ago, a person commented that Birthdays really aren’t that important – and she doesn’t care much when they roll around… the underlying message being that I was too old to want a big deal made of my special day. This person also demeaned me and a dear friend who came to share in my grief when my Mom died last year, sneering when knowing we were sharing a King size bed in the hotel.

Yes, I do look forward to October 22nd each year – though the day comes with sad thoughts and lingering questions that will trouble me to my end of days. I was born unbelievably at 5:15 AM (never again would I arrive anywhere so early!) at White Plains Hospital to an Italian couple. I will likely never know if I was ever held by either the man or woman – or if only by the delivery doctor and nurses and later nursery staff. I’ll never know if there were any tears of joy (doubtful) but rather tears of shame or dare I wonder, horror. Logically and intellectually, I can understand the fear and disappointment of the couple who had already lost a baby daughter a few years earlier to the same genetic condition. That baby died within a few days. For whatever reason unexplained, my internal health was sturdier if not my skeleton make up. Diastrophic Dwarfism (as I first remember the condition being called) or Dysplasia is a recessive hereditary condition so both haywire genes were present from the egg and sperm in the embryo that resulted in me. Having taken Anatomy and Physiology some time ago now for my MS Ed/CTRS requirements I was amazed how the slightest change can result in either life threatening illness and/or body malformation, even something as seemingly minute as a missing protein.

Many people know by this blog and website that I give school presentations and give older students an overview of my life story including details of being given up by my biological parents. Thankfully, I was given the chance to live out in society rather than an institution as was the usual decision through the end of the 1960s. And despite an handwritten note of instruction “No Pictures to be taken of this Baby” put atop my Hospital records (copies received when in my mid 20s), Department of Social Services workers decided to put my picture in the local county newspaper seeking a family. The family decided upon was the Marianos, then of Bronxville, NY – Doris and Bill with their daughters Joanne, Beth and Andrea.

Sadly, I lost both my Mom and Dad in 2015 so my main story tellers are silenced forever but I have memories of the stories told to me and pictures that accompany the story. An official family portrait and individual baby pictures were taken soon after my arrival. And there would be many more pictures over the years. What a gift of acceptance and love.

Ironically, I developed a love/hate relationship with pictures. After my cute baby days were over and I entered the awkward teen years and adolescence doubts took hold, I really did believe I was a freak. I so wanted people to want to take my picture and then when they did, I would pick apart each photo to decide if I looked weird or not. I’m particularly sensitive to anything shown below the waist. Last year was my HS Class of 1985’s 30th Reunion. Though not pleased I was confined to a wheelchair and slouching back, I nonetheless decided to glam up as much as possible and was thrilled when friends/classmates wanted to take pictures. Ridiculously, I still remember there were no candid photos of me in our Senior yearbook. Of course I was never a cheerleader or played on sports or part of the popular cliques but I still wonder why I didn’t rate one candid back then and chalk it up to my not being pretty enough.

Once during a summer camp week away, fellow campers convinced two sweet boys with developmental disabilities from Long Island that I was cute and interested in them; the message being that only those with diminished capabilities would be interested in me. I never told anyone about that until a year or so ago, but the humiliation has always stayed with me. That and women whose sons I “crushed” on would subtly tell me that girlfriend or wife material I would never be…messages I can never shake though I desperately wish I could.

Now back to my Birthday …the big 49! 49 is big, one might ask? Well considering I have vivid memories of wondering if I’d make it to 50, yes, 49 does seem to be a milestone. A few times over the years I asked a couple of doctors, two women actually (maybe I felt safer asking the tough question with them), what my life expectancy was. Both times the responses were “Don’t really know.” Yet, doctors have looked after me and have done what’s needed to prolong my life. During 10th Grade, I underwent a tremendously difficult spinal operation that left me in a body cast for 6 months and cut short my Sophomore year. The reason given was that my spinal curvature was increasing and would “crush” my heart. In 1992, a C3-C4 degenerated disk was removed before it could slip and slice through my spinal cord. In 2015, there were two more arduous and complicating spinal surgeries to allow continued breathing and hopefully a return to mobility. 50 doesn’t seem to be much of a question mark anymore though my other questions of whether I’d still be scooting and doing acrobatic leaps on/off the Throne and over the tub wall are more or less answered.

The weeklong retrospective back to baby pictures day has helped me realize how far I have come. I may not be so adorable anymore (really what 49 year old respectable woman wants to be cute?) but dang, when I try …I can be pretty and even sexy! Happy Birthday to me!

“Write only if you cannot live without writing. Write only what you alone can write.” ~ Elie Wiesel

Today is July 4th, 2016, 240 years after the Continental Congress voted to adopt the Declaration of Independence – for the 13 colonies, from that point on to be known as the United States of America, to sever ties with England, from their oppressors, to rebel against taxation without representation among other iniquities.

IN CONGRESS, July 4, 1776.
The unanimous Declaration of the thirteen united States of America,
“When in the Course of human events, it becomes necessary for one people to dissolve the political bands which have connected them with another, and to assume among the powers of the earth, the separate and equal station to which the Laws of Nature and of Nature’s God entitle them, a decent respect to the opinions of mankind requires that they should declare the causes which impel them to the separation.
We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness.–That to secure these rights, Governments are instituted among Men, deriving their just powers from the consent of the governed, –That whenever any Form of Government becomes destructive of these ends, it is the Right of the People to alter or to abolish it, and to institute new Government, laying its foundation on such principles and organizing its powers in such form, as to them shall seem most likely to effect their Safety and Happiness…”

Can’t help but read these words with new appreciation and insight. These are tumultuous times we live in. Within the past week, we saw our original Sovereign power declare its independence from a modern international union.

For all of America’s current faults and divisions, and they are plentiful, I am grateful to be an American citizen. Am grateful to have been born on this land. Am not sure how or when exactly I became a mini Yankee Doodle Dandy and Patriotic fool – was as far back as Elementary School. My parents were always involved in politics and we celebrated the 4th of July each summer with cookouts, sparklers, fireworks over the Hudson River and later right over Orange Lake. Dad would buy us Commemorative Coins – including the 1976 Bicentennial Set. I’d read books set in the Revolutionary Days, including one about a little girl living in Bedford (and for the life of me, I can not remember the title or the character’s name). I read biographies of important Americans. I delighted in the Bicentennial Celebration during 3rd grade with Miss Partalis. Holly Hobby, Martha Washington, Betsy Ross were a few of my “idols” – yes, I was a bit of a geek way back. 6th & 8th Grade Social Studies classes brought more American History and my fascination grew.

Then came 9th Grade Non Western Studies with Mr. Klinger. Herbert Klinger who wore drab olive green sweaters and slacks. He was a world traveler and had made numerous educational films. (Seriously, what kid wasn’t thrilled to see the projector set up when entering the classroom?) We learned of the caste system in India I remember. And surely we learned something about ancient China (I think?). What I remember most, though, is sitting in my mid row seat hearing and seeing about babies in Africa that were left out for Animals to eat or to die in the elements – the babies that weren’t healthy or “normal.” I remember shifting around in the chair, not knowing what to do ..wanting to cry but not wanting to draw attention to myself. Back in those days there were no such thing as “trigger warnings,” not that I do think it was or is necessary. Life happens and survival of the fittest means rising to the occasion and facing difficulties when they come. If we were all to be warned ahead of time, where would our strength develop from? Back to the point at hand, 9th Grade Non Western Studies Social Studies Class was when I knew for sure I was blessed to have been born in America. Sure I was left in a hospital by my biological parents, but I wasn’t put outside to perish.

And I wasn’t even left in a hospital forever because wise women (and I do believe the powers to be at that time were wise women) decided I should have independence to a degree, life, liberty and the pursuit of happiness out in society – my unalienable rights as much as the next baby.

Our government is not perfect, there are the pros and cons to Benefits – but I’ll save those for another time.

For this July 4th, 2016, the 240th Anniversary of this great imperfect nation, I am grateful to be an American and I pray to be here in 10 years for the 250th Celebration!! Regardless of my physical independence, whether it bounces back some or not, I am still of Independent Mind and that is everything.

Finally! The #ALSChallenge for raising awareness for ALS aka Lou Gehrig’s Disease. Mr. Gehrig from the earliest time I heard of Yankee lore was my hero …his grace and dignity in the face of “bad breaks.” I know all about bad breaks, too, but like Mr. Gehrig, am lucky to have so much support from here, family and friends and my community of classmates from K to College and my town.

Now Hundreds of Thousands have taken part of this fun challenge …imagine what hundreds of thousands could do if we take part of of many challenges — to help raise awareness for all sorts of debilitating conditions but also more importantly — Peace in our World.

How we think of ourselves is often at odds with how others think of us. In this short memoir, author and diagnosed Diastrophic Dwarf Geri Mariano shares an encounter she had with an open-minded, inquisitive young boy named Freddie, her seatmate on an hours-long flight.

#EqualityIs: acceptance of differences of all kinds.

As digital communication becomes faster and more accessible, we are given a window into the lives of others, and given the chance to better understand differences. As TV shows like “Little People Big World” showcase people living “ordinary” lives simply in differently shaped bodies, I believe that opportunities for women with disabilities will continue to grow. As a woman with a disability, I look to women like Illinois Congresswoman Tammy Duckworth, a double amputee now serving as a leader for our country. I draw strength from examples like hers in my work raising awareness about disability.

In my experience, sometimes the simplest of interactions can affect great change, particularly with children. Children can often see beneath the odd-looking exterior a person might have and to see what’s inside. They are more open than adults, until they are taught that they shouldn’t be. These few moments with this little boy named Freddie remind me that the work I do speaking at schools is worthwhile. I remain hopeful that there might now be countless other open-minded children like Freddie out there.

FREDDIE

Still adjusting myself in the spacious accommodations, I shifted back and forth, trying to get comfortable.

“I love first class,” said the child seated next to me.

I nodded, heartily agreeing with his declaration.

“I do it every time I fly,” he continued. “Do you?”

I wish. I had only gotten this seat assignment five minutes before. Still weary from worry, I wiped away a stray tear of grateful relief over finally being able to relax on the second leg of the flight home, after a three-and-a-half day whirlwind trip.

Shaking my head no, I responded, “Hardly, but when I do, I like it very much.”

“My mom works for the airline,” he revealed, “so we get whichever seats are left open after everyone has boarded.” He looked at me expectantly, ostensibly awaiting an explanation as to why I was privileged to be in the airplane’s front cabin. “Usually, whenever the airlines mess up my seat assignment,” I began, trying to make it sound simple, “they end up moving me to first class. It doesn’t happen very often though.”

Satisfied for the moment, he went on. “My parents are divorced. I’m an only child, you know, so my mother takes me to a lot of places! And we always go first class. I guess I’m pretty spoiled.” He stated this so matter-of-factly, as if it were the most common state of being for a child.

How does one respond to such a proclamation? And what was this kid going to be like the whole two hour flight to LaGuardia? I shifted around to look at my neighbor more closely. He certainly dressed well–Lands End shirt, khaki baggy pants and a World War II type leather flight jacket. He had a small, round face and frame, pinchable cheeks, and cropped brown hair.

Before I could gather my wits for a response, he was already fidgeting with a hand-held Nintendo computer game, complete with different game cartridges and a re-charger apparatus. He then turned back to me and focused on my “legs” over which he had climbed earlier.His mother had seemed annoyed that I couldn’t move them out of the way.

“They’re prosthetics,” I started. “They cover my own legs, so I can walk. They don’t bend at the knees, so I need to sit in the first row, the bulk-head, so my legs will fit sticking straight out.”

“Oh.” Like most kids, he looked as if questions were bursting out of him.

The flight attendant then came with my complimentary pre-take-off drink, one I hoped would push me into the sleep which I had missed over the past few days.

Out of the corner of my eye, I saw my neighbor watch as I juggled the drink, a purse, and four fast wilting roses. Spotting my flower predicament, the flight attendant promised to come back with wet napkins for the flowers after we were airborne.

“Just came from a wedding and plucked these from my bouquet to bring home,” I offered, attempting to direct the course of conversation.

He nodded understandingly and with piqued interest. “Whose wedding?”

“A friend from college,” I replied enthusiastically, happy for an opportunity to talk of the grand wedding, my first as a bridesmaid.

He eyed me suspiciously following that last answer. “How old are you?”

“Twenty-five. How old are you?”

“Nine. You don’t look that old,” he pressed.

He was right, though. Even sitting down, I still looked shorter, younger and I sounded younger–my short vocal chords give me higher pitched voice, a physics phenomenon I learned in high school. And my arms were also shorter than normal. In medical terms, I am a Diastrophic Dwarf, but to kids, I’m an odd looking package. I didn’t blame him for wondering and staring. And he wasn’t rude about it like the kids who pester their parents with “Mommy, look at that girl.” Parents could be the worst offenders though, when they shame their kids into silence, thus perpetuating the “different equals freak” credo.

In medical terms, I am a Diastrophic Dwarf, but to kids, I’m an odd looking package. I didn’t blame him for wondering and staring. And he wasn’t rude about it like some kids.

Being nine, the boy’s interest immediately changed to a more urgent matter–why the flight attendant hadn’t asked his meal choice yet. On her next walk-by I flagged her down and explained the young boy’s concern. Once he finally gave his selection, he turned to me with a new look.

“Hey, thanks for getting her attention.”

“No problem,” I said, taking pleasure from my all too infrequent role as helper as opposed to help-ee. I suddenly felt very protective of the lad and wanted to know his name. “By the way, my name is Geri.”

“I’m Freddie.” He held out his hand to shake my offered hand, like a well-mannered boy. Most grown-ups are usually much more tentative during an introduction.

For a self-proclaimed spoiled kid, he was turning out alright.

The flight attendant returned with the promised napkins and Freddie asked about the wedding again. I gave a brief summary while he listened intently.

“Are you going to get married?”

He certainly was direct. A very good question though, one that had swirled in my head a lot over the past weekend. Some people didn’t think so. “Hope to, but you know, I’ll need to have a boyfriend first. Right now I don’t have one. But how about you? Do you have a girlfriend?”

He smiled shyly then took me into his confidence about his girl back home.

Later I asked Freddie about his travel plans.

“We’re going to New York for New Year’s. I have cousins on Long Island and we’re going skating at Rockefeller Center,” he bubbled with anticipation.

Above the clouds, Freddie and I dined together. When lunch came, Freddie was the perfect gentleman, offering to open all the plastic wrappers. The packages I could open with my stub-like fingers I did. The ones that were more difficult, I turned over to his eager hands.

When lunch came, Freddie was the perfect gentleman, offering to open all the plastic wrappers. The packages I could open with my stub-like fingers I did. The ones that were more difficult, I turned over to his eager hands.

From that point on we covered a range of topics, including my possible graduate school plans. Freddie assured me that if I ever chose Emory University, he’d fill me in on all the hot spots to go in his hometown of Atlanta. We didn’t talk the whole time though. He played some more Nintendo and even offered me a turn which I graciously refused. Once, while he dozed for a few minutes, his mother came forward, leaned over me and checked on him. Smiling, I said, “Your son has been very friendly and helpful. I’ve enjoyed talking with him.”

No smile, no nod of agreement. Nothing. Was I invisible?

In due time, we arrived in the air space over LaGuardia only to circle for an hour. The whole eastern seaboard had been fogged in for over 24 hours and the delays were endless. After a while the captain announced that the fog was still very heavy, that some planes were being sent to other airports. We had enough fuel for one landing attempt and for flight to Boston if need be.

Feeling uneasy, I turned to Freddie and grinned, to reassure him, just in case he might have been worried. He just nodded and then we both braced ourselves.

The plane started its descent but then the pilot pulled it up suddenly. “Sorry folks for that last jolt. I tried to land, but I couldn’t see the runway down there,” the captain apologized over the intercom. “We’re off to Boston. We won’t know for a while whether we’ll stay over there or try to come back here again later,” he explained further.

Freddie still appeared nervous, even after we were safely above the dense clouds. He went back to talk to his mother and returned dejected. “She won’t go to New York now,” he reported.

After finally landing at Boston’s Logan’s Airport to a round of applause, the captain came on with more apologies and advised us to wait for instructions. Clearly vexed over this detour and with apparently no patience to await word of our fate, Freddie’s mother came forward and hauled him out of his seat. He had accurately predicted that they’d be headed back on the next available flight to Atlanta. In whatever class seats were open, I figured.

Freddie loaded his belongings into his backpack and climbed over me for the last time. Shrugging his shoulders, he looked forlorn, and even apologetic. Before disappearing into the jet way, he glanced back, his eyes a bit brighter. “I hope you get married someday, Geri. I think you’re a nice lady.”

Maybe, someday. If there are more like you, Freddie.

About the Author

Geri Mariano is a 46 year old woman with congenital defects of all parts skeletal. She was given up by biological parents of Italian heritage in 1967, when despite changing attitudes, shame and fear around babies who were not “normal” was still prevalent. Social Workers responsible for Geri’s care placed her picture in a local county newspaper, seeking a family for her and though never legally adopted, Geri was raised from 18 months old with a mom, dad and three sisters. She attended public school in New York State before the 1973 Rehab Act mandated that public schools accept students with special needs and she was “mainstreamed” before mainstreaming was a term used in education. Geri went on to attend Smith College and later graduated with a MS. Ed in Therapeutic Recreation. It was at Smith that she began talking with campus pre school students to promote awareness and understanding of those with differences. In the years since then, Geri has been interviewed for TV and newspaper outlets and taken her talks around the country. You can read more about Geri and her work at her website, JustCallMeGeri.com.

I am not a parent, so the ubiquitous phrase “Back to School” does not elicit the glee it might otherwise from adults counting down the days until their children leave the house each morning. However, I am excited that the school year is fast approaching. And the reason for that is simple: school had, and still has, a tremendous impact on my life.

Unabashedly, I was one of those students who actually looked forward to returning to the routine of school each September. While I enjoyed the summer months, my physical limitations (I was born with abnormalities of all things skeletal) meant that I could never be as active as most kids. Therefore, school was a place I could belong–and even thrive academically –with peers for six to seven hours each day. So, during the spring of 1972, my mom and I made the rounds of Northern Westchester school districts as I was due to start Kindergarten come September. Our mission was to meet school administrators and find which districts would welcome a student with special needs; there was no federal mandate to publically educate children with disabilities at that time.

In all my presentations, I give much credit to the Byram Hills School District for accepting me before it was legally required to do so. Was everything hunky-dory from my first day to graduation thirteen years later? No. Were restrictions placed for my own “safety” (and likely school liability)? Yes. Were parents more nervous than my fellow Kindergartners? Yes! Was I made to feel an oddity from classmates? Happily, mostly No … and this is why I embarked, several years ago now, on sharing my stories.

When at Smith College, unable to walk quickly about campus, I zoomed around on what I affectionately called my “buggy”. My daily routes (to classes and my work-study job) took me past a campus pre-school where, unsurprisingly, the children who saw me would stare, point or giggle. A wise teacher flagged me down one day and asked if I might meet with the children. I readily accepted. Introducing myself, I asked them if I looked “funny.” When they admitted that I did, I agreed with them. I don’t remember all we talked about, but, when leaving, I suggested that now that they knew me, maybe I wouldn’t look so weird to them. Suddenly, I had many new friends, and each day after, there were waves and shouts of “Hi Geri!”

Pieces of a puzzle I hadn’t realized existed began falling into place. ?I thought of my Byram Hills classmates and how they had always known me. Years later, when reconnecting with many through social media, they all confirmed my hypothesis: they’d always accepted me because they always knew me as just Geri, one of them. I was never a stranger, so I was never seen as “different.” And had they known of any bullying incidents, each offered they would have quickly taken care of the situation. What an amazing gift!

A group of three or four pre-teen girls began following me around while I was shopping alone. I can accept a look here, a stare there, even a pointed finger or snicker. But what I cannot abide are triple takes or being trailed by youth of an age that should be better mannered. I remember turning, raising my shortened arms, asking “do you have a problem?” The girls quickly moved away, but, minutes later, stealthily began following me again. I then turned to track them to the adult charged with their behavior. Loathe as I am to complain to a stranger, I interrupted this woman on her cell phone and simply stated that the girls had been very rude. Shrugging, the woman responded, “What do you expect?” I expect adults and parents to do better.

My mom often admitted I was dealt a bad hand and that life isn’t fair. However, she’d continue, that did not mean the world owed me anything; nothing would be handed to me on a silver platter. Has life been a struggle? Yes. Have I had good times over the years? Absolutely. Would I like life to be easier? Of course. But I’d also like to see better understanding in the world for a whole host of difficulties.

I choose to do my part to facilitate that understanding, at least of differences, in our community and elsewhere. Will you join me? ?Thanks, Just Geri

Longtime Armonk resident Geri Mariano was born with diatrophic dysplasia, a lifelong condition that affects bone and cartilage resulting in many physical and social challenges.

August 26, 2014
In recent weeks there has been much commentary on this site and other local outlets about handicap parking and the abuse of motorists parking in reserved spaces without the requisite tag or plate proof. There are few spaces for those drivers or passengers who have mobility issues, whether walking with walkers, canes or prostheses. or those who use wheelchairs to get around. Handicapped parking is just one aspect, though, of the overall issue of access to businesses in town, here and in other communities.

Twenty-four years ago on July 26, 1990, President George H.W. Bush signed the landmark legislation The Americans with Disabilities Act into law. The ADA, as it is commonly referred to, is a comprehensive civil rights law that is supposed to guarantee people with disabilities the same opportunities as every other citizen to participate in mainstream American life – whether by employment or recreation, including purchasing goods and services, and to participate in state and local government programs and services.

The ADA is a federal law and grievances can only be brought through the Department of Justice. However, New York State has its own legislation regarding rights for people with disabilities. For example, the 2010 NYS Uniform Fire Prevention and Building Codes has Chapter 11 dedicated to Accessibility. Section 1101.2 Design calls for “Buildings and facilities shall be designed and constructed to be accessible in accordance with this code and ICC/ANSI A117.1”

These regulations and guidelines are separate and distinct from the ADA building access guidelines and are under the jurisdiction of the NY Department of State. However, each municipality, unless it gives up its responsibility to its County, has the primary responsibility to see that the codes are in compliance. And that responsibility starts with the Building Department and Inspectors.

While available reserved parking spaces are necessary, they are useless if residents cannot get into the store or restaurant of their choice once they have secured a parking space.

It has been said in years past that mobility and access issues don’t affect a large enough segment of the population in North Castle, a small municipality, but that does not negate the fact that the rights to equal access remain and should be upheld.

Every NYS municipality should be up-to-date on the regulations and codes regarding access; they must also make sure that there is compliance of these codes. In an older community with older buildings, there are exceptions to meeting the access requirements, but new construction and renovations of a certain magnitude do require compliance. With an ever-aging population and new communities opening, such as The Bristal Assisted Living that caters to older residents, access to shops and restaurants becomes more relevant. And sadly, sometimes an able-bodied resident may suddenly find him/herself with a debilitating injury or illness, and access becomes necessary.

Businesses should recognize that being accessible is beneficial as it can expand their customer base. Shopping areas such as Sir John’s Plaza and Armonk Town Center could benefit from better parking and less hindrances along the walkways. Restaurants that technically are accessible should not have tables that block entrances. Customers needing the accessible openings should not be made to feel intrusive if diners already seated have to get up and move.

While not a “popular” issue or one that does not affect “enough” people, access to businesses and services nonetheless is a right for all people and should be respected and striven for.

Sometimes coincidences are too glaring to take lightly or to dismiss an opportunity not taken once before in almost a nod to Rip Van Winkle …an opportunity to share a lasting message about self-worth and image.

This 2014 winter in the north east had been cold and snowy and it reminded me greatly of a similar winter in 1994 where it uncannily snowed every Wednesday. If it was Wednesday there was invariably a 2 hour school delay or a full snow day. Likely I would have ordered a few lunch specials from the local Chinese restaurant which never turned down a request for delivery. Then I was housesitting for a church family and was mostly “stuck” in the house, cozy as it was, because I simply couldn’t go out in the snow and ice, and I wasn’t working.

Fast forward to 2014 and we had almost the same winter and snow patterns although the day of week differed as to when schools were delayed or closed. All these years later I have the added benefit of technology and social media to keep me entertained; I scrolled daily through Facebook updates and could not help but be confronted with endless posts about The Today Show anchors, specifically the female ones, being brave about going make up free on air. I found my hackles being raised the same way one feels the hair tingle on one’s arm in an alarming way that reminded me of 20 years ago. I dug out my “never-did-anything-with-these-writings folder and found the following letter I wrote to Oprah Winfrey on February 21, 1994 with intent to send this essay written the summer before at a writing workshop:

“HOW TO LOOK LIKE A COSMO GIRL.”

– click –

“SIX SISTERS OUT TO MAKE A CHANGE LATER TODAY ON DONAHUE.”

IT’S A BEAUTY MAKEOVER

– click –

“WANT TO LOOK LIKE A MILLION WITH NEW CLOTHES? WATCH OUR SPECIAL

REPORT.”

– click –

“TIRED OF THE SAME OLD YOU? WANT A CHANGE? SEE WHAT THREE WOMEN

DID. WATCH OPRAH THIS AFTERNOON.”

CLICK OFF!

One reading today perhaps would ask “Who’s Donahue?” but Miss Winfrey would still be known and I believe Cosmo, as in Cosmopolitan, is still a go-to in print magazine for all things women’s issues – focused mostly on fashion and beauty. Yet isn’t it a shame that the same topic aggravates me? That this is still an issue and subject of morning talk show segments and countless magazine articles, both on line and off?

With the age of social media and new tech advances, beauty can be very easily distorted with body sculpting tricks or facial enhancements. 20 years may have passed since my original essay but the topic remains basically the same …how does Society define beauty and is its mainstream definition false?

More from the never-seen-the-light-of-printed-anything now dog-eared, stained essay:

I try very hard not to let myself fall into the quicksand pit of self-doubt and increasing self-consciousness over not being able to measure up to the impossible standards society and commercialism set. I would love so very much to be “made over”.

But my mistakes aren’t solely those of the wrong color eye shadow, poor fashion sense or an unflattering hair cut (although I have also erred in those areas). My “mistakes” are more complicated and they can’t be fixed.

Using the medical lingo of my doctors, I was born with physical deformities of the upper and lower extremities, that is, of the arms and legs. The official medical diagnosis is “Diastrophic Dwarfism”. My abnormally developed legs, feet, arms and hands are attached to an otherwise normal looking torso. But, I lack proportion. Reaching out in a curve, my arms and hands together measure approximately 11. My fingers are short, stub-like and are unable to curl into a fist. My legs and feet together are shorter than two feet and are not rigid enough to support my 75 pound body for walking or standing. I do walk however, with the aid of straight, unbending prosthetics that fit over my own legs, like casts. With my “legs” on, I stand approximately 4’6″. With the “legs” off I sit on the floor, no taller than 3 feet, and look similar to an oversized baby who scoots to move about.

Being masochistic, I watch these talk shows that show beauty fashion, exercise, etc., make-overs. The producers always find an average, everyday housewife, or a typical career woman who isn’t quite “hip”. In less than an hour, the chosen woman has a new hair-do, new clothes, and new make-up. The audience then “oohs” and “ahs” and claps over the transformation, the “after” after the “before”. If it were only so easy.

(Oh and for truthfulness’ sake, I am no longer 75 pounds)

I generally don’t watch morning shows anymore but every now and again, and against my better judgment, I watch KLG and Hoda’s Ambush Plaza Makeovers on Thursdays. And just the term makeover is disconcerting …make over …as if something is inherently wrong with what already is … and that which cannot be changed … no liposuction, no facelift, no anything save perhaps the longed for but still unavailable 1970s TV fantasy of bionic legs and arms.

Now, while I know that blog posts are not supposed to be advertisements for any brand I do appreciate the message of one body care line’s campaign for “real beauty” as well as a German department store’s use of mannequins modeled after real people with varying kinds of body conditions/disabilities. I also applaud a college classmate Cynthia Wade’s recent short documentary entitled “Selfie” debuted at Sundance Film Festival to challenge teen girls and their mothers self image beliefs. (Of all ironies, I cannot take selfies myself because my short arms can’t reach out far enough to hold and snap a picture with a hand-held phone or iPad camera.)

Too late now for regrets but I wish I had been brave enough to send the excerpted letter to Miss Winfrey on February 21st, 1994 when I typed it:

Sometimes, it may be hard to believe, but I forget that I’m different…but at other times, usually in social situations I’m all too painfully aware at how different I look. I wish I could be beautiful and turn the head of a man. I wish that people would expect that I would have a boyfriend or a husband someday, not that it’s out of the realm of possibility. …

2014 Best Supporting Actress Oscar Winner Lupita Nyong’o was chosen as People’s Most Beautiful Woman for this year …a nod that beauty can come in all nationalities. Also, in reading her bio, Nyong’o wrote, produced and directed a documentary about the treatment of albinos in her family’s homeland of Kenya – another group that is targeted for ridicule for a DNA malfunction beyond personal control. Miss Nyong’o’s mother’s message to her that she was beautiful was a gift and should be a message all young girls receive worldwide.

Twenty years later and I do believe, society’s attitudes towards differences – whether appearances, race, and disabilities are changing if slowly though. And I don’t believe notes like the one in my hospital birth records stating “No pictures to be taken of this baby” would happen anymore …I hope not anyway. My biological parents apparently could not handle a non-looking “normal” baby though I had the usual requisite 10 fingers and 10 toes.

Women and girls especially around the world are subject to discrimination based on simply their second X chromosome (China’s society’s high value on sons for example) but add any kind of difference and much hardship can follow.

Can Social Media help change the persisting “definitions” of mainstream beauty of a size 4 body, light skin or long flowing hair?

Profiling continues to be a hot topic in the news and social media. I live in the NYC metropolitan area, but even if I didn’t, challenges to “Stop and Frisk” have made national headlines. And though the immediate furor has subsided some, the Trayvon Martin tragedy is never far from people’s minds. I honestly wasn’t sure I would dip into this topic but a recent revelation has prompted me to go full in. Ironically using the water image is dangerous as I cannot swim due to my physique. My limbs are too short to sustain treading and my bottom is definitely heavy enough to pull me under. Regardless of the obvious dangers — I am “scooting” (as I’m unable to stand on my own legs) into these stormy waters.

Now I need to switch gears briefly to explain why I decided to wade further in. Duck Dynasty is the reason, or rather one of the leads of Duck Dynasty is. I’m not sure I would even have noticed this news item if Duck Dynasty had not been all over Entertainment news media the past week. Somehow the fascination has bypassed me the first three seasons it has been on the A&E TV channel. With its fourth season premiere last week the “stars” of this now reality favorites have been all over the talk show circuit promoting the new episodes. Truth be told, I’ve actually used the remote control each time a segment would start with family members of this multi-million dollar sporting dynasty. Yet, a snippet a few days ago caught my attention and I can’t even tell you when I heard it or where I saw it. Apparently during one of these recent TV promotion interviews, Jase Robertson, of this Duck Dynasty, says he was escorted out of a NYC hotel after being mistaken for a homeless man. For those who, like me, were oblivious to all things Duck Dynasty, here is a link about its program and its family members: http://www.aetv.com/duck-dynasty/about/

Similarly, an erroneous judgment was recently made public when Oprah Winfrey was also on an extended media tour promoting her new movie. When shopping in an upscale Swiss boutique, Ms. Winfrey was met by a clerk who told her she wouldn’t want to see an expensive handbag. Ms. Winfery believes the clerk was ostensibly thinking her customer would not be able to afford such a luxurious item. There has since been some back pedaling and apologies regarding this latest “misunderstanding,” but still the origins of this incident seemed to have been based in part on a judgment made by the clerk.

These two situations come to light after President Obama made public comments after the verdict in the killing of Trayvon Martin in Central Florida. George Zimmerman was found not-guilty of the second degree murder charge of teen Trayvon Martin. President Obama spoke of knowing what it is like to have people react nervously when entering an elevator or being followed in a department store.

Now this is where the “scooting” into these waters can quickly turn dangerous should a wave come and knock me over. I will not presume to know what it is like to inhabit a body of a different color but I do know what it is like to inhabit a body of a different looking, and, for most, a misshapen, form. The reaction may be born of a different underlying fear, but I also know what it is like to enter an elevator and have riders look the other way. I also have uncomfortable memories of pregnant women look at me with a passing wave of worry in their eyes. Fortunately, this occurrence does not happen as often these days and I have to guess it is because of advanced pre-natal testing. For a separate blog topic one day I’ll address how technology advances in pre-natal testing is a worry for me in other ways.

In 2007 I entered an upscale hotel in Rome, Italy and while I was not escorted out I have the distinct memory of being looked down upon (literally as I am only 4’6”) by the Front Desk clerks. Their expressions were visibly those of “who is this ‘creature’ walking into our beautiful establishment?” My trip to Italy was a 3 city tour for a 3 part celebration: My Master’s Degree Achievement –Turning 40 – Honeymoon for One (as I can’t wait forever). Rome was my second stop of this perhaps once-in-a-lifetime adventure. I had already been to Florence and stayed in a 4 star hotel and I had not felt that same sensation there. My appearance in the 4 star hotel in Rome was not expected or welcomed as I clearly did not measure up to their usual fashionable clientele. What I do remember is I purposefully wore my late grandmother’s stunning sapphire and diamond ring in an attempt to lend myself an air of sophistication, one that is not normally associated with my outward appearance. I am not a wealthy person with money to throw around, but again staying in higher end establishments was a purposeful decision (though the Italian Adventure definitely broke my personal bank). This was a personal social experiment that I wanted to undertake as well as to see “bucket list” worthy historic and cultural sites. I never did overcome that initial distaste from the Rome hotel staff; I cut my stay short and left a day early for Torino. Like the staff did in Florence, I was warmly welcomed to the Winter Olympics Host City of 2006 and not made to feel as though I didn’t belong.

Haughty reactions were and are not limited to Italian cities. I have walked into upscale stores here in the US and in my local area. There are still times when I get the distinct impression staff would prefer me not to be a customer. I am not as mobile as just 5 years ago so my world has shrunken some. I am however still traveling – most recently to Chicago and Iowa – and I am still acutely aware of people’s reactions to me. Again, I emphasize the reaction is not of fear of personal safety but fear of the unknown and the uncomfortable. With this always in mind, I either was born with this ability or came to quickly learn it (survival of the fittest?) …to break the ice with those around me and be the one to start talking and/or joking. Laughter is a great common uniting force; besides, it is quite contagious (much like yawning). When people are laughing together there is little room for fear or uncomfortable feelings to develop. I am an unabashed FB devotee and I enjoy reading people’s posts, viral graphics/videos and amusing observations on life in general. A few days ago I read a post where folks were discussing how riding in an elevator can be most uncomfortable unless one goes in with a fun attitude. I wish I could recall now where I read it and can go back and quote some of the suggestions people shared on what to say when entering. Such a wonderful idea really to go in with the intent to break tension instead of adding to it with silence and foreboding.

Social discrimination is prevalent in our society, no question about it. It is not, however, limited. Social discrimination touches upon many different kinds of differences …of sexual identity, of religion (especially when outerwear is noticeable), of weight, of color, of food diets, of mental illness, of city inhabitants vs. rural residents, of trailer home owners, and so much more. “Freak” circus side shows are not from such a long time ago. I understand (though I have not personally gone out of my way to find out for sure) there are still dwarf tossing and midget bowling events taking place world-wide.

I am nowhere near a rocket scientist or a neuro-surgeon …I am just one who tries to think of ways to make things better. I may be naïve and I certainly was not always generous with thoughts to others. When I was younger I would cry out many a night in the dark, “why me?” Folks who wanted to be well-meaning would offer the oft used encouragement “you are so strong and would not get more than you can handle.” Another comment from a loved one has stayed with me some 30+ years later, “you are lucky because all your differences are evident.” I think this family member meant that I wasn’t struggling with unseen issues such as mental illness or other non visible medical problems. Does it suck that kids point to me in stores and ask their parents “what’s wrong with her?” Yes, quite simply, it does. Must I accept that this occurrence will happen again when shopping or eating out? Yes. Would I like the world to change instantly and all prejudice and profiling and instant judgements to disappear? Sadly, I don’t think this will ever happen. But what is within my power is to not act angrily in response but to show by example and to teach and to reach out instead of hiding behind fear or resentment that ‘life isn’t fair.’ Is it a burden to not be in this all for myself? I used to think so. Now, I understand it is a part of who I am.